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Friday, October 18, 2013

This week in a local parent forum, a member spoke up about MMS, a “treatment” that TPGA has examined (with horror) in the past. (See TPGA science editor Emily Willingham’s Dangerous Interventions: MMS and Autism.) A TPGA Editor was present during the MMS forum discussion and suggested we are reprint the conversation, with permission from that forum's Moderator.

Maybe there should be a 12 step program for autism parents who have fallen for misguided and misdirected "hope."

----

I am the father of a 5.5 year old ASD kid. He was diagnosed with autism three years ago. For the last three years, we tried many "treatments" including Andy Cutler protocol [chelation], multi-vitamins, Methyl-B12 shots, GFCFSF diets and various therapies. At one point in time, we were giving around 35 supplements and medicines per day. We saw some improvements for each of the above therapies. But they were MINOR.

My wife wanted to try MMS 8 months ago. But being a pessimist about autism therapies, I did not allow her to do MMS. I told her that it was too "dangerous." But four months ago, we decided to give it a try. The results are truly remarkable. My son is behaving like a normal kid. There are many improvements. We stopped all those supplements. Just MMS. He is doing great.

Being an Engineer, I tried to understand how MMS works on ASD kids. But after seeing the results, I don’t think of that any more. I have confidence now that we can completely recover my son soon. Before MMS, I had little hope.-Now Hopeful Dad

Dear Now Hopeful Dad,

As an observer of the Cure Community over the last decade or so, I have seen a fair amount of things come and go. Some so-called treatments disappear, others just fall lower down in the noise level. But the most damaging of all the interventions I see touted is the one that starts, "Never Give Up Hope" and continues with "Try Everything."

If what you hope for is a cure, then my advice is to give that shit up. It is one of the most addicting and dangerous drugs I've ever seen. It leaves other dependencies in the dust. Parents who get their first high off it chase that feeling for years to come. They crash back to earth time and time again, but it doesn't matter. The euphoria it produced the first few times and the lure it dangles is so powerful that it trumps everything else.

Of course there are dealers out there who are glad to help. Like every other drug, it is trailed by both business and other junkies at every step. Fellow chasers encourage new parents to go farther, try harder, dig deeper. They trade stories of their best jags and convince new parents to try ever more bizarre things. The sad part is they think they are helping.

I don't know what has happened with your five year old son in the last few months. I do know that developmental bursts happen all the time. Natural growth and forward momentum and love and therapy all play a role. I also know that the time correlation between when you started using bleach on your child and the start of a period of improvement is so powerful that anything I say will be lost. The rush that comes from thinking your child may not have to have it so hard after all, that autism (and all that comes with it) is in your rear view mirror is an unmatchable high. What can I say to compete with that?

I will say it anyway, though. Our children need us to love them the way they are. We can find paths to the best possible lives for them. We do endless and indeed painful trial and error to find the right tools to help them access the world in a way that works. This may not feel as rapturous as the promise of a cure, but long term it is the real deal.

When a child is pronounced cured or “completely recovered” I have to wonder, why are their parents still in this group? Over the years I have heard from a variety of parents who tell me they have found "It." But they are still here because "It" wasn't "It" after all.

For me, "It" is education. How can I tailor my son's education to teach him what he needs to know, in a way he can access the knowledge? How can I teach others to be helpful to him in that effort? How can I help my community and the world to accept him, autism and all? And how can I educate myself to be his ally and his champion, but to step back when the path to excess beckons?

I'm not a Cure Chaser. You'll find plenty of those on the Internet, but I'm a Coper. And a mom in love. My son is brave, fun, surprising, and amazing as is. I bet yours is too.

Monday, October 14, 2013

I've written about disability-friendly museum days before -- at the San Jose Children's Discovery Museum, Palo Alto Junior Museum and Zoo, and San Francisco's Exploratorium, specifically -- and how awesome they are. I will be frank: my son does not go to children's museums except for during these special events in which the museums are open to a limited number of guests with disabilities and their families, the staff are trained to accommodate, there are quiet rooms to retreat to, social stories are prepared ahead of time to introduce attendees to the space, and he can focus on fun.

So I am grateful to San Mateo's CuriOdyssey (formerly Coyote Point Museum) for hosting a Super Families event last weekend, and hope they will continue to host these events periodically. My son, his little sister, and her friend got to have the best time ever. I'll let our event pictures speak for themselves, below.

Does your area have disability friendly museum days? If they don't, and you want to encourage them, send the staff our way -- we can put them in touch with some of the wonderful folks who have orchestrated these events.

Wednesday, October 9, 2013

I take in a gulp of air and shut my eyes tight before I plunge beneath the surface.

One, two, three…

It starts to feel like my brain is tingling from the inside.

Four, five, six…

I’m not counting in seconds, not in minutes, but in hours.

Seven, eight, nine…

I search for anyone, anything who will ground me through my ever-increasing internal chaos.

Ten!

When given the cue, I cannot break the surface fast enough, gasping
for breath. I’ve done this thousands of times, and yet, after
twenty-five years of daily descents, I am no more sure that I will
survive the next one.

----

I’m really not a writer. Writers have readers. I write because it’s
the only way for me to get from one day to the next without
semi-spontaneous internal combustion taking effect.

I’m not a writer. I’m a processor of the world, an organizer
of experience, and, certainly, a weaver of words. Much like typical
people have no need of the world to tune into their every thought as
they learn and grow by connecting this neuron to that one and forming
new pathways, it matters little to me whether others read the ways in
which I develop my sense of myself and the world.

My memory goes back to before my first birthday. Prior to sometime
much later, though, my memories are only sensory; I remember smells,
tastes, and sounds … the painting on the end of my crib, my sister’s
writing on the chalkboard, and smell of the air sanitizer at my daycare …
but I really cannot remember almost any my thoughts and opinions. Without a way of processing the world and my place in it, I had no means
of forming these memories.

I was an early and voracious reader. I had sight words in my second year and devoured The Hobbit in
third grade. Yet, my language development was uneven; I asked my mom
several years ago when I began to ask “how are you?” to other people,
and she responded, “Lyd, we’re still waiting.”

I taught myself to type in fourth grade and took to instant messaging
much like I take to cats and pink and Diet Mountain Dew. In middle and
high school, I would form rather close friendships with kids in my
grade online, but when we met in the hall or in class, I was absolutely
silent. I didn’t understand why I had so much language ability … and
yet, simple conversation evaded me entirely. I could lecture, for
certain, and at home, my mom was either asking me to say something,
anything, to anyone, or, conversely, for-the-love-of-all-that-is-good
please stop chattering. My sister (to this day) answers my every
conversational volley with either, “I can’t hear you! Speak up!” or,
“Geez, Lydia, I’m right here!”

I kept no friends from high school and made none in college until my
senior year. I met Leigh in late August, and one rainy evening in
mid-September during which I had dragged her to the gym with me, she
asked, “Hey, have you heard of Asperger’s?”

“Yeah,” I said. “We learned about it in one of my education classes; I think I have it.”

“Um, I know you do.”

Several months later, I met with a clinical psychologist who had
oddly-perfect teeth and a heavily-gelled comb over. I left with a
diagnosis of Autism Spectrum Disorder. It was January 7, 2009. I was
21.

My final semester of college began just a week later, and with it, so
did the crumbling of my world. I had pushed so hard and tried to just be normal for
so long that I simply, one day, could not do it another minute. The
social and communicative demands of student teaching put so much stress
on my atypical neurology that I became violently ill. After two weeks, I
dropped student teaching in order to take an “alternative assignment”
with more support, but upon doing so, I had to forego any hopes of a
teaching license. My plans for the future had burst.

I stumbled and staggered through the months until graduation, every
moment ready to fall over the edge and into total burnout. Rather than
all at once, it came on gradually, and by the time I went home in May of
2009, I was a vacuum. Everything went in; I heard, I thought, I felt.
Nothing, nothing came out.

Nothing came out … unless my hands were on the keyboard. It became my
lifeline. I used it to communicate anything more complicated than
simple questions-and-answers for over two years. During that time, I
also began to blog, and I was surprised when more than a few parents of
children with autism were interested in my writing. I was able to
articulate why autistic people do the things we do that strike typical
people as downright odd. “Just as a newsflash,” I would say, “I think you’re odd.”

During the last two years, I have read dozens of books about autism
and connected with others (mostly online, of course) who have it. As I
learned how my mind worked and how I could make myself more comfortable
in this world, I slowly came out of my shadowed state. My typing,
mostly in the forms of blog posts but also in books comprised of short
essays, emails, conversations, and texts, has been the lifeline that
connects my brain to this world. Every moment I don’t spend at my
computer is like holding my breath under water.

I take in a gulp of air and shut my eyes tight before I go out for the day.

One, two, three…

I run errands with my mom. Grocery store, Target, post office.

Four, five, six…

Doctor appointment and drop off the dry-cleaning.

Seven, eight, nine…

The light, the noise is so overwhelming, it’s become unintelligible.

Ten!

Breathe. I’m settled in my comfortable spot with my favorite blanket, with my fingers at home on their keys.

Friday, October 4, 2013

Paula Durbin-Westby is an Autistic advocate and an
autism parent. She and her son recently appeared in the PBS P.O.V. documentary
Neurotypical, a film meant to challenge public perceptions of Autistic people
as well as allow Autistics to represent themselves. Paula’s portrayal in the
final version of the film, however, was not at all what she was expecting. We
talked with her about the distress of being publicly misrepresented as an
Autistic, as well as her recommendations for filmmakers and other media types
hoping to accurately portray Autistic experiences.

What was your goal in agreeing to be interviewed
for Neurotypical?

My point was to counter
pernicious media assertions that Autistics (and other people with
neurobiological disabilities) are incapable of parenting and relationships.
Unfortunately, I think the film’s portrayal of me has actually reinforced some
of those assertions.

I don’t have any problem
with being shown as disabled, or as Autistic. I would be perfectly happy
looking, sounding, and being disabled. Unfortunately, my disability is not
shown in any substantive way, except for the fact that I am wearing headphones
and I rock a little bit.

I do have a problem
with the focus on my
marriage being so out of proportion to the amount of filming done, the things we
had talked about, and the interests and goals I had brought to the film making
process.

Ironically, I had actually
asked the filmmaker to show some not-so-great things about autism, quipping
“maybe an argument,” but I had no
idea that my relationship problems would become the focus of my part in the
film and that my marriage would be used as a vehicle for hooking interest in
it.

I had told the filmmaker,
in an email the night before the filming with my husband, that I did not want to talk about my finances, though
I ended up being the one to bring them up when my husband tried to blame our
relationship problems on my diagnosis). Part of why I trailed off and
did not comment after a while was that I did not want to continue the conversation
or the filming of it.

I also thought that, if
anything, those topics would be a little bit of my part, given that the
filmmaker had told me that I would have a somewhat significant part in the film
– and as my image figures significantly in its marketing materials. I never
expected my part to be so hyperfocused on the marriage.

What are some of your other concerns about the way
you’ve been featured in Neurotypical?

This film is not really
about my life; it is the filmmaker’s creation. Since it does not have aspects
of my life that I want in the film, since it implies things about my life that
are not true for me, it is not about
me. It’s not my story. It’s not about
my life as an Autistic person. It is about the filmmaker’s vision for the film
itself. He has been clear about that through both interviews with him as a
filmmaker and the marketing material -- I have been assigned a storyline by the
filmmaker:

“Newly
diagnosed” (not true at the time of the filming)

“Coming to
terms with her diagnosis” (not true at the time of the filming)

The “success
of my marriage” hinging on the agenda-laden question of whether or not
Autistics and neurotypicals can have fulfilling relationships” rather than also
including the facts and my point of view about the finances (which the
filmmaker did have access to, via my emails to him, and through what I actually
said in the film).

Using what my husband said as “my” story! He actually
has more words than I do in the movie, the marketing materials, and the “lesson
plan” questions. The “lesson plan”
is materials based on the film that are to be used in middle schools, high
schools, library discussions, etc.

So, my part of the film is
not the “point of view of Autistics”
after all. All of that storyline about the marriage was made up by the
filmmaker and PBS, and I think made all the more harmful by using just that bit
of the actual footage.

And why does Jonathan Mooney, who wrote “The Short Bus,” who is not even
Autistic, get to talk over me in the film? Why don’t I get to talk about
neurodiversity and my own neurology? I realize that it’s a film technique, a
voiceover thing, but I really do not appreciate it, given the fact that I
don’t, for example, do a voiceover over someone else.

Mooney is held up as the
expert, whereas my own voice about neurodiversity and disability rights
activism is effectively erased. So the film does me no good in the “disability job
market sphere,” either. The only people who know what a good public speaker I
am at this point are people at Autreat and a few other venues at which I have
given presentations. I will say that the hosts at various places I have spoken
have commented that I am a good speaker and engage well with the audience.

Also, in the film I don’t
talk about autism. I talk about my diagnosis, which is something I am not
interested in talking about, but which is the one thing that non-autistics
always want to know, so they filmed me explaining that to them. “When did I get
a diagnosis, am I self-diagnosed?” Autistics meeting each other or getting to
know each other typically don’t even ask about a diagnosis. It’s not that
interesting, actually. Talking about when one got a diagnosis is not the same
as talking about autism.

It did not help after all to mention that my problems with my
husband were financial, because now film viewers get to weigh in on whether or
not they believe me. An autism expert was invited to an online screening by PBS. This is what she had to say:

“This scene is interesting in that once autism is
labeled, they have an ahha [sic] moment, the person isn't just odd. And with
this couple it took a turn for the worse.”

Nothing I have ever said about my financial situation has
been a lie. But now, everyone who sees the film gets to decide whether or not my
relationship issues were due to autism or finances. I am trying to raise a
child and pay a steep debt, and it only damages my situation further for people
to be commenting about it. In order to make sense of what I mean by steep
debt, the cost to me is about $280 perweek
for the next 14 years, and I will have been paying that for a total of 21
years. This is $280 a week for a disabled person who works two part-time jobs
with no benefits.

What would you change about your participation in
the film?

In earlier correspondence
with the filmmaker’s production team, I got responses saying they were not going make some of the changes I had
requested at that time, so I stopped corresponding with them about the film. I
stopped trying to get the filmmaker to take out the blurbs about my marriage
because I did not think I could -- which was obviously a mistake. So the
misinformation on the filmmaker’s website went on for several years, and also
appeared in reviews, which I did not catch until I started looking for them.
Certainly no one sent those to me; I think they might have been hoping I would
not notice them.

PBS and the filmmaker
finally did make some of the changes I requested. But this was only after I got
through to someone at PBS, only six days before the film aired, after a couple
of years of the film’s being marketed using damaging material.

The material PBS finally removed
was exceptionally objectionable. It directly implied autism in the “success” of
relationships with non-autistics.The
film was aired on July 29. On July 22, some of that egregious material still
remained, and I had to contact PBS and the filmmaker several times to get it
all removed.

After the film aired, I
continued to look for mentions of it online. I found that on the resources
page, PBS had listed an anti-Autistic group, and had NOT listed the Autistic
Self Advocacy Network (ASAN), www.autisticadvocacy.org. I
wrote the following to PBS:

“One of the reasons I
wanted to participate in this film in the first place was to promote the
Autistic Self Advocacy Network, because I was working extensively with the
organization at that time. It is a bit odd that this important organization did
not make it onto your list of resources. I guess I should not be surprised, but
I am. Ari Ne'eman, the founder of ASAN, has been on the Interagency Autism
Coordinating Committee (IACC) and was the first Autistic person to be appointed
to the National Council on Disability. People need to know our history, and you
can't talk about our history without talking about ASAN.”

I do want to say that PBS
and the filmmaker have worked with me, but it feels like too little, too
late, plus their link fact-checking has been sloppy or nonexistent, so I am
the one who constantly searches to find the bad stuff and report it to them. I
know that they did not want to make me uncomfortable, but the film was already
out there, with the marketing, and the links, and they were not able to think
through or understand the negative impact it would have on me.

Some people might think I
am insisting on too much, but as long as I have to
be in the film and have my image all over the place, I am going to have a say
in what they put on their site.

How has being mischaracterized affected you
personally?

Heightened anxiety and
stress. Some people might think I am this stressed out because, well, Autistic
people just get stressed out. But my anxiety about this film goes FAR beyond my
typical level of stress. It is almost as bad as the stress I had when my
husband pressured me into refinancing the house when I did not want to.

I experienced anxiety when
I first saw the PBS promotional material that singled out my husband’s comment
about “Where’s the accountability?” and did not include anything I said, the
Autistic person’s point of view that the film purports to show. The marketing
material has constantly focused on my husband’s feelings about my diagnosis,
claiming that I am unaccountable, that I have a new sense of “entitlement” that
threatens the marriage, and other unsubstantiated misinformation.

I experienced a great deal
of anxiety when I saw an “interview” I had not actually done,
and finally figured out how it happened. I did not interview at all, but something I sent to the filmmaker was
copied and pasted into an interview I knew nothing about. The interviewer
claims she “got a chance to speak with me” but I never did communicate with her
at all, nor was I asked by anyone to be interviewed.

And, I experienced such
anxiety that I stayed up for 27 hours the day I found that PBS had linked me to
one of the anti-Autistic groups I have spent significant time countering over
the years. PBS subsequently removed the link.

This is not my typical anxiety, which is at a
much lower level (although fairly constant because of the permanent money
problems).

If I start thinking about
how one of the autism hate groups might use the film, I become extremely
anxious and so I am trying to not think about that possibility but to make
plans to methodically do searches for instances of this, if they ever exist,
and to quit blaming myself, which I can’t seem to do yet.

If this sounds like I am
being “ungrateful,” do remember that I do consider most of the footage of me to
not be doing me any favors, but to be causing me problems, some perhaps
unforeseen, like what will happen now that the film has attracted the attention
of people whose “work” against people with disabilities I have countered for
years. After the film was aired on PBS, I checked every few days to see what
was being said about it (and me, unfortunately). During this time I found
things like the “interview” I never did, links to opinions about autism and
about me and my family that made me cringe, and this kept me up a lot of nights
being very anxious.

As an aside, the irony of
my husband asking where the accountability was … I was being accountable by
working overtime to pay bills. That’s why I learned I was Autistic. I was
taking on so much extra work after the refinance that I was working as fast as
I could on an extra book about psychology, which is where I saw the term
PDD-NOS and almost did not even look it up as it did not need to go in the
index, and I was working against the clock to get the “extra” work done so I
could pay bills.

How were you expecting to be characterized in the
film? What did the film miss about you and your work?

I was expecting more about
parenting. I even sent an email to people the day after the filming, saying
how excited I was that positive aspects of Autistic parenting would be shown.
And I do like the footage of me with my child, but my parenting is not even
broached in the film other than seeing me with my son a couple of times. Why
wasn’t my being an Autistic used in marketing materials? (Or anything other than that marriage
stuff?) I don’t get to say anything about autism or neurodiversity much, except
for that bit about Ari telling me, in the first email I ever sent to a group of
Autistics, that he did not hide his neurology and he let his actions speak for
themselves. That’s a nice bit.

I was also hoping to see
some of my autism and disability advocacy work. Jim Sinclair, founder of Autism
Network International (ANI) and Autreat viewed the
film and told me, in private correspondence, “but they interviewed you and
had nothing about any of your other advocacy work at all!”

Some people have said, in
response, “Well, it’s not a film about advocacy.” But since advocacy work is a
big part of my life, and this is purportedly “my point of view,” you would
think that at least some of that material would be used. And, it is a film about advocacy. Of course it
is. It does not go into details about specific advocacy initiatives, but other
people in the film comment extensively about the neurodiversity movement, which
is about advocacy.

At the end, the credits do
say that I am on the Board of the Autistic Self Advocacy Network and that I
advocate tirelessly for disability rights. But nothing of that comes across in
the film. Hopefully people are reading the credits and not getting up to get
snacks at that point.

Because I smiled, and did
not look serious, one reviewer interpreted that as me not being able to deal
with reality. That’s the guy who called me a “bubbly daydreamer.” I realize that
the film was made for neurotypicals, not Autistics, but really, there’s a lot
more that could be said about autism,
and I think I must have said something
about it in all that filming, something that might be geared toward Autistic
people. To code my smiling (which neurotypicals often complain that we don’t do
enough of!) as “airheadedness” ensures that I won’t be taken seriously by
anyone reading that review. That’s
the blurb that was used to make the promotional material, by the way.

I was also expecting to be
in the film more, given that I was told that the film followed three people,
one of which was me. In the original 88-minute version, I did not come into the
film until over 2/3 of the way through, and then it was to primarily focus on
my marriage. Because I am not in much of the film, I don’t know how it can be
said to “follow” me. I would think that a person who does not come in until
most of the film is over really should not be the focus of marketing, but it’s
fairly clear why that happened. The story of a failing marriage where autism is
called into question sells films. It sold this one to PBS.

What are your hopes for how the film will be
received, given how upset you are about your characterization?

The best thing I can hope
for from this film is that it does not have much of an impact and that people
forget it. I really hope that at some point I will forget it. I try to already;
it makes me feel so anxious that I try to put it out of my mind except when I
am checking to see what new things have been written about it (which makes me
more anxious, but I do want to see what is being said). I have not been able to
promote it at all. Why would I do that to myself?!

I am even hoping that some
day the filmmaker and PBS will decide that, since they can’t market it using my
marriage any more, there is really not that much of a point of having me in it,
and do a version that takes me out completely.
Since I did not come in to the original until more than 2/3 of the way through,
I imagine they can just remove my section, leaving most of the film intact.

What do you want other Autistic or autism community
interviewees to learn from your experience? What do you want interviewers to
learn?

Autistics (and parents)
are a vulnerable and inexperienced source and need to be safe when being
interviewed for movies, magazines, etc. We need to change the paradigm about
how people talk about us and use our lives to make their livings.

Solutions include having
the right to view and decide about material used up until final editing of the
work. This “takes power away” from journalists and filmmakers, but it is more
honest. Sacrifice a bit of your power over your informants/subjects in order to
achieve an outcome that will be desirable for all.

I do not think that the
Filmmaker Knows Best, just because that is the person who was making the film.
I think the filmmaker did not think through all of the implications of me being
presented in this way, any more than I was able to. Other people, including
other filmmakers, have tried to tell me that this filmmaker is my ally. I don’t
think so. Too much has gone wrong. He is a nice person, but he does not know
how to represent me or my point of view, and some of what he has said about me
in interviews is questionable at the very least.

I am also concerned that
people too easily confuse the idea of filmmaker as an artist with that of being
an expert on the material being filmed. A horrifying example is notorious autism pseudoscience proponent Andrew Wakefield’s
partially completed documentary ”Who Killed Alex Spourdalakis?,” which is titled
as though Alex’s murder is some sort of conspiracy, even though his murderers
-- his mother and godmother -- are well-known and in jail with no bond.

I am not the only Autistic person distressed by a filmmaker’s
misrepresentation. Sharon daVanport, a fellow Autistic advocate and activist,
had this to say about non-autistics interviewing Autistics:

“Paula
and I have discussed our disappointing film experiences in detail and we've
been a source of encouragement to one another – it’s good to know you’re not
alone when you’re feeling traumatized. As she already explained, filmmakers
have a responsibility to represent their film subjects with accuracy. When
filming people with disabilities, that responsibility means extra care and
consideration -- especially with respect to communication challenges that might
very well be discovered after the filming. Neither Paula nor I were offered such
consideration.

"Like Paula, I found that the director of the film my
children and I participated in did not take my concerns about accurately
representing neurodiversity seriously, and he went
so far as to use shaming-language in an email after I shared my concerns, he
said, ‘You should listen to yourself. You're pinning yourself into a corner by
trying to live up to these standards of what neurodiversity is in your mind.’

"That’s right, he attempted to tell me how I should think about neurodiversity -- even
correcting my own thoughts about neurodiversity. I'm still in shock at his
audacity about that one.

"So this is what I have learned, this is my takeaway: I
will only participate in interviews where questions and an outline are
presented to me ahead of time. Though not a guarantee against future edits,
this option at least has a better chance of ensuring accuracy. I don’t
naturally process spoken language in real-time, so any answers I provide to
someone in an interview, will, in all likelihood, require editing in order for
the truth of my thoughts to be conveyed in the final product. Working with a
director who honors that access need and is willing to put it in a signed
agreement is imperative to a project’s integrity.

"I learned this lesson the hard
way: our words are immortalized when recorded, and anything less than our true
experiences should not be preserved. If directors and filmmakers are not
willing to provide individual access needs to people with disabilities, and
they don't further ensure it in writing before filming, then I recommend
reconsidering participation.”

Yet people say “You should have thought of that” and place all the
responsibility on you.
The filmmaker or PBS or the marketing people who were hired by the filmmaker to
come up with materials should have considered my precarious financial situation
and the fact that I am disabled.

Even
if some of my worst fears about the film’s potential for damage to my community
never materialize, the negative effects on me personally have been profound.
Even without one more disturbing
thing happening.

People have told me that I am in this for the long haul -- the film is out
there. Negative things will be said or implied about Autistic/non-autistic
marriages/relationships. Even PBS and the filmmaker did that before I put a
stop to it.

I
can envision having to live with the fallout from this for a long time; and
even if I don’t personally, other than how it is affecting me now, it might be
used against some other Autistic person and I will never know it. That (and the
financial concerns, of course) is what keeps me from sleeping well, or at all.

I want to apologize to anyone
and everyone who might be negatively affected by my participation in the film.
I have publicly apologized to Autistic people on my blog, and in person at
Autreat (which was both a heartfelt and a symbolic, in-person apology to ALL
Autistics), for anything negative about autism and marriage that might come out
of this film. This apology is not intended to excuse myself for anything that
might make it harder for other people but to acknowledge and take full
responsibility for my part in it.